The Chronic Illness Diary Of A Young Adult is a blog of a young adolescents life and health issues with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Chronic Fatigue Syndrome, Basilar Invagination, Chiari & Chronic Pain. It covers the journey from a teenager to young adult, documenting how life drastically changes when you become chronically ill whilst aiming to help others and learn from fellow chronic illness sufferers in the process.

Pages

Friday, 6 February 2015

The injustice of living with chronic invisible illness

Image: Remap UK Twitter via Google Images

In July 2014 I posted a detailed blog post on 'The frustrations of a chronic illness'. This post went down surprisingly well. I wasn't expecting half as many of the views that it gained. I was overwhelmed by the amount of comments, shares, re tweets and most surprisingly even a Facebook share from the website Inspire (which my mum has been an avid reader of for many years now), that it received within a few days. It felt so good to know that what I had written had possibly struck a chord with some people and they too felt all or some of what I had spoken about.

This is a subject that doesn't really disappear, so I felt the need to write another post based on the injustices that come along during chronic illness in hope for it to add towards a continuous movement in the process for those of us who have an illness to stand together to make a change. If we go quiet about this issue, it's not going to take us any further in progress or get us noticed in changing the world's perspective on how illness can affect young people, teens and those with rare disabling health issues in more ways than imagined.

Whether it be that we are feeling judged or being verbally judged by others it's something that is difficult to just accept and be OK with because quite frankly, it's not OK. A lot of opinions and frequent comments received are based on how well you appear to look on the exterior standing or sitting there in front of someone. It's as if make up, a smile or your personality must mean all is well in your life. In some circumstances this can be a good facade, however when the comments seem to be constantly given, it can begin to grate on a person a little. This is based on first hand experience I received in previous years, it's often upsetting, unkind and unfair yet we are often put off defending ourselves because it can feel like losing battle.

Being told 'you look well and you would never know you are sick' has always felt like a back handed compliment to me. I know people mean well however it makes me feel like because my illness is rare and misunderstood, it's also maybe slightly irrelevant to others. Those commenting on your looks don't see that everyday is usually a bad day, low mood, the effort it takes to complete the smallest tasks and the amount of medication you possibly take during your day to day life. They just see the present you, who is usually vacant from all the pain you are trying to comprehend and cope with. Pain that can often force you to live a life with limitations, yet there is no obvious sign of this to others.

Hopefully, in time, I may grow a thicker skin towards these types of assumptions. Obviously this isn't necessarily an insult to some in life, some people can find positive aspects in these comments, it can sometimes give them a boost. However on the opposite end of the spectrum, I know for many of those that are chronically ill, this process really can be seen as a sign of dismissal. I have come to gradually understand that for those who struggle with people not understanding, we don't actually need to convince those who don't believe in our illnesses of 'our world'. They will most likely never understand. However it's through learning and hearing of the misconception on invisible illnesses that it can affect us as a whole community emotionally.

You often hear many horror stories of how people with 'invisible illnesses' have parked in disabled bays and had inconsiderate members of the public make an assumption based on how they look physically and therefore make a scene over how they are not disabled and not entitled to park in a bay. I personally (and fortunately) am yet to be in such a situation, I do have a friend with the same illness that has. I often wonder what these kind of people deem 'disabled'. People often appear to instantly dismiss that your illness could be as bad as you say or describe because they can't physically see it, until a wheelchair or aid is physically involved or seen. Just because on the outside you may look young enough to not be 'disabled' doesn't make you fit, healthy or able and its a shame this isn't something that is one of the first things to enter a persons heads or seen as being possible for young people in this day and age.

Things such as fatigue, weak joints and muscles, breathing and lung problems unfortunately are not physically obvious but valid reasons for being disabled. I would express how it is quite sad that there is a general assumption that young people can't actually be disabled if you base this on the assumption of looks. Maybe if they spent 5 minutes with the person they have judged they would see that actually their invisible illness limits their abilities in a short period of time in daily life.

With rare illnesses, there comes the battle of finding the correct doctor with enough knowledge for you to reside under their care. During appointments, you ask for the help of tools for you to gain a better quantity of life. In my opinion these include, medications to help ease or slightly suppress your pain in order to function better, specialised physios and local support and knowledge from a GP. There never seems to be enough specialised care available to those who suffer with debilitating illness. People travel up and down the country to attend a 20 minute appointment a few times a year with a specialist consultant. You often wonder how you will ever have the correct care plan or tools to gain a better life with such limited options available. It can be infuriating to go into an appointment and feel like you haven't progressed or achieved what you aimed. When you tell doctors what your life has become (bed bound for the majority), you are referred to things like the mental health team or anti depressants instead of support of a specified care plan.

Then there's the injustice of the social aspect of your life once you become ill. You miss out on things that are common in everyday life. Your ability to socialise is usually interrupted by being unable to manage your pain and fatigue, you lose friends and you often feel like you lose sight and a part of yourself and a common reality. The ability of feeling like you have a place in the world other than just being chronically ill or disabled can often plague your mind. Your independence becomes slim to none, you have to give a lot of things up but still have the mentality to achieve. Like I have said on twitter, I truly take my hat of to those of you out there who still manage to attend school, college, university and work. I seriously think you are all amazing and inspiring!

Your health problems will never just disappear from your life, in fact when something feels so obvious to yourself yet invisible to others it can often make you rather down and depressed. Pain is a constant thing you are dealing with every minute of the day, in fact in some cases our illness is actually the most consistent thing in our life. It is certainly mine. So the fact that this isn't obvious to the eye can make it harder to cope when you appear to be 'normal'.

Pain intervenes with 99% of the want,will but most importantly the ability to do things. However the scariest factor is often that this is a daily process that we must go through and overcome.